holding pattern day

Well, sort of. I mean I had a specialist appointment today- which is pretty much treading water. Kind of, so do you want to have daily steroids again? Do you want to double your current medication? Okay do you want to go on another medication that will mean you need to see an ophthalmologist regularly?

I have been on all of these previously btw, it’s a case of now trying combinations. Yes, we have reached current range of treatments. But it could be worse. There are people in their 90s with this disease who cannot go on anything (alternative meds included) because the side effects are so much worse than the side effects of prednisone, think liver failure and very fragile skin and already slowed down immune systems. I might have kind of had a change of heart in the office over that because one day that will be me. I am making those hard calls now because one day I won’t even have a choice between a few not ideal options.

So I made a compromise- I’m not doing daily steroids, I will start doubling my daily dose of leflunamide. I’ll see what side effects I can tolerate.

I just don’t want to go back on steroids. It’s a stress on other systems than just the immune system. It’s one thing to deal with repeat infections another to deal with them and added heart and adrenal funtimes.


The hydrochloroquinine does apparently have soft tissue benefits- so nodules could be lessened 🙂 I’ll see her again in four months. And if I need to

Also, Rituximab infusions are booked!! They can be done in an afternoon now- I only have a low blood pressure issue so that’s fairly easy to anticipate and correct 🙂


But I also am seeing the hand surgeons again. oh poop. I may have to have that changed, I think I’m booked in on the same day as one of my infusions. I will call.

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